Syrinx surgery?

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Syrinx surgery?

Postby andij » Fri Jun 24, 2011 7:28 pm

I am new to this site having stumbled across it whilst doing some research about my conditions. I have posted on other sites before, asking if anyone is in a similar situation to me or had similar surgery without any luck so far. i am hoping someone out there might be able to help/advise me. I have neurofibromatosis with scoliosis, vertebrae scalloping chiari malformation, syringomyelia and hydrocephalus. I have had 2 posterior spinal fusion surgeries (after I fractured my spine), posterior fossa decompression surgery and have had surgery and many revision surgeries for a VP shunt that was put in about 2 years ago. I was due to have anterior fusion surgery a few weeks ago which was cancelled as scans showed that my syrinx had returned (I had a syrinx before the decompression and shunt surgery which was corrected by that surgery). I now have a syrinx which is pretty much the full length and width of my spinal cord. I also have a very large cyst which is at the FRONT of neck section of the spine rather than the back! I am under a team of neurosurgeons in England who are very experienced and have dealt with chiari, syrinx and associated conditions before. However, they say my situation is quite unusual and they haven't treated someone with a syrinx/cyst like mine before. I recently had a ICP monitor put in to check whether the shunt is working properly. It is !! Unfortunately therefore it is not just a case of simply correcting the shunt. They are unsure why exactly the syrinx has developed and why is had got so large in a relatively short space of time. They have decided to do surgery from the back of the neck area (presumably to drain the cyst and the syrinx). I am nor sure exactly what surgery they are doing yet but I don't think they are putting in a spinal shunt or stent. If this surgery is not successful, (they don't know whether it will be since they don't know why the syrinx developed!) they are talking about going in through my mouth as the cyst is in a difficult place to get to with it being at the front rather than the back of neck part of my spinal cord. I think the consultants are surprised that I am not having more symptoms than I am considering the state of my back. I have daily headaches but only the 'severe' headaches every few weeks. I am starting to have aches and pains in my arms and hands with some numbness and cramping and clumsiness with my hands (regularly dropping things etc and difficulty with screw lids and tops etc). I also have constant pain and stiffness in my back but i always put that down to the fusion (I am fused with rods from my pelvis to shoulder blade area). I am telling you all this partly because I need to talk to people who understand what I am going through but also because I want to know if anyone else has had similar syrinx problem. What surgeries have any of you had to treat a syrinx and has it worked? Has anyone heard or or had surgery going through the mouth for this and did it work? I am seeing my consultant in a few weeks to learn more about the surgery they are going to perform (I'm pretty clueless at the moment) but am booked in for surgery on the 14th July. I would be really grateful if anyone can give me some info about their experiences and what they think about my syrinx and the surgery I am having. I know this post is very long so thanks for listening. I feel better for just having put this all down on paper - so to speak. I look forward to hearing from you.
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Re: Syrinx surgery?

Postby June » Sun Jun 26, 2011 11:34 pm

I wish I could help you, but if I understand you correctly, you had a syrinx which was deflated or which disappeared after surgery--and now a new and larger one has appeared. My surgery, which involved fusion of vertebrae in the neck, did not help with my syrinx--we knew that it was a long shot at the time, and I needed the neck work anyway.

You must be very upset to have a new syrinx and be facing another surgery. I've never heard of surgery through the mouth, but I'm not a doctor. Maybe that makes the most sense.

I certainly wish you the best of luck--sounds like you've got good doctors helping you. Please keep us posted on your circumstances.

June
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Re: Syrinx surgery?

Postby andij » Mon Jun 27, 2011 4:54 pm

June

Thanks for your reply. Yes, I had the fusion surgeries first (for scoliosis), then the chiari decompression and shunt surgery surgery (after which my syrinx 'shrunk'?) and now I have a very large syrinx. I am really worried about this as I have stupidly been reading about symptoms such as paralysis etc if a syrinx isn't treated or gets too big. I know this is very unlikely but my syrinx is very large and what if they cant find a way to successfully treat the syrinx! Fingers crossed the surgery will work tho. Have they suggested any further surgery to you for reducing your syrinx or are they going to wait and see if it changes? Do you have any symptoms caused by the syrinx?

Thanks

Andi
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Re: Syrinx surgery?

Postby June » Mon Jun 27, 2011 6:07 pm

Andi,

Yes, I have constant and severe pain, muscle weakness, some numbness, and I'm beginning to have bladder issues. These are all the result of nerve damage. The only treatment I've had since the surgery in Jan '07 is pain meds. I've been taking approx. 200 mg of Oxycontin and oxycodone combined daily. Now my doctor wants to do tethered cord surgery, and I'm scheduled to have it on July 13. Three years ago he said no tethered cord--now he says I have it. I don't know...he says they know more now and can diagnose better. I wonder if it is just the only thing he can do. He actually said that this is the only treatment left to try.

As far as paralysis, yes, it is possible and it does happen to some people with SM, but it is by no means guaranteed just because you have a syrinx. But there may not be any surgery for some people who just have SM that will help. The syrinx has to be a certain size before it can be shunted. And sometimes shunts don't work. Sometimes it is best to just treat with pain meds, maybe things like Neurontin, and wait and see. Each case is different, of course. When do you need to make a decision about surgery?

June
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Re: Syrinx surgery?

Postby andij » Tue Jun 28, 2011 1:32 pm

Thanks for the info June.

Sorry to hear about your pain and the nerve damage. Is your pain in the back, neck and shoulders as well as arms? I don't know anything about tethered cord surgery but I really hope that this is the answer for you and at the very least gives you some relief from the pain. I like to think (when I'm having my positive moments)that the consultants we see are knowledgeable enough to make the right decisions for us and wouldn't be doing surgery unless it could help so fingers crossed for you. My consultants have said they 'have to do something' about my syrinx and that it can't be left. I found out today I am seeing my consultant on Monday to explain the surgery she has planned for me. I am booked in for surgery on 14th July so will be thinking of you and your surgery when I'm in there. Good luck, hope everything woks out for you.

Andi
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Re: Syrinx surgery?

Postby June » Tue Jun 28, 2011 6:20 pm

Andi, yes, my pain is pretty much all over at this point. It started between the shoulder blades and spread from there.

Thanks for the good wishes. I'll be thinking of you, too, and sending lots of positive energy your way. Let's beat this thing!

Keep in touch - June
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Re: Syrinx surgery?

Postby andij » Fri Jul 29, 2011 6:16 am

hi june

just wondering how you got on after your surgery a few weeks ago. hope all went well and was successful and you have not been left in too much pain. i had my surgery, after a weeks delay, and things seam to have gone well. they were able to drain they large cyst at the front of my neck, which they are now hoping will help the large syrinx down the rest of my spine drain. if not they will just put a shunt in the syrinx to drain it. they also did a bit more decompression removing some more bone to make more space for the flow. the surgeons were really happy with how it went so i've got to be pleased. been home a few days now and obviously some neck pain but its manageable. the biggest problem I'm having is i have been left without the use of my right arm!!!!! just cant do anything with it. its numb, heavy, have no control of it and doesn't feel like it belongs to me. hopefully it was just position or something during surgery and it is just temp! they have checked scans and just said it will come back in time!!!!! meanwhile just struggling to do everything with my left hand - much harder than people realise!! please let me know how you got on when you are feeling up to it.

take care

andi
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Re: Syrinx surgery?

Postby syrinx48 » Fri Jul 29, 2011 9:08 am

Hi Andij,

I am Annemarie and lives in Holland. I also ' work ' together with the German Syringomyelia and Chiari association. Their Chair of the Advisory board is Prof. Dr. Samii of the INI in Hannover. That is a Clinic comparible with the Chiari Institute in New York. Prof Dr. Samii is a very good and outstanding NS and knows a lot about all the problems you are having. He has written many articles, and people from all over the world is seeing him or ask for consultation.

You must read his website and you can read that it is possible to send your MRI's to him. He certainly will take a look at it and give advise or tell you to come over. They can also tell you then what the costs are. Also your Ns 's in England must have heard of him. I once was at a congress, and he was there too, surrounded by Ns 's who wanted to know certain things and kept asking him a lot.

My advise to you is, send your MRI's to him and wait what he says. Perhaps he has advise for your NS, so that they contact eachother for what to do in your case, for they don't know it anymore. I am certain that Prof. Dr. Samii likes à challenge. He has told us once on another congress that most of the time he has to restore the things another NS has done.

I give you THE website where you can find more information:

http://www.ini-hannover.de/en/neurosurgical-center.html

I hope this can and will be of any help.

Annemarie
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Re: Syrinx surgery?

Postby June » Fri Jul 29, 2011 2:28 pm

Andi,

Glad to hear you had surgery, but very disturbed about the arm. Sounds like your results definitely were mixed. Hopefully your doctor is correct and the condition is temporary. My advice is to listen to Annemarie--she is very well-versed in this malady we have. Hopefully you won't need more surgery, but best to be prepared if this situation does not begin to correct itself pretty soon.

Annemarie--thanks for providing this information. Hopefully Andi will begin to recover without more surgery but in case she doesn't, I'm glad she will have options and some knowledge about what to do.

Andi - My surgery went well with no side effects that I know about yet. Weakness and fatigue are my big problems now. I have much less pain than before! When I woke up from surgery, my leg pain had completely disappeared! So happy! Since then, I have had some leg pain, but it may be muscle soreness from getting a bit more exercise--at least I haven't had the accompanying sharp nerve pain. I am looking forward to getting back into the pool again.

I really hope your condition improves quickly. Please keep in touch and let us know how you are doing.

June
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Re: Syrinx surgery?

Postby karenb » Sat Jul 30, 2011 5:02 pm

Andi,

I read your post several times, but hesitated to respond because your condition seemed so complex. I was glad to see that June and Annemarie responded with some good advice - they are both extremely knowledgable.

I have SM in my thoracic spine, and the pain (so far... fingers crossed) is from my waist down - concentrated in my lower back, my rear end, and the backs of my thighs... the rest of my legs are pretty much numb at this stage. My legs are weak and unsteady, but aren't paralyzed. My bladder, however, is paralyzed - most likely from the SM, but nobody can really say for sure.

In all my doctor visits and reading, I haven't read about paralysis as a product of SM (it can, however, result from surigical treatment of SM). From what I understand, SM can disable the legs by causing atrophy of those muscles that are controlled by the nerves whose function is affected by the SM. Enough atrophy, and you can't really rely on your legs, but you're not actually paralyzed, if that makes sense.

Keep us posted about how you're doing!

Karen
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Re: Syrinx surgery?

Postby June » Sat Jul 30, 2011 6:08 pm

Andi - Haven't heard from you and hope that has no ominous meaning. How are you feeling today--how's your right arm? (I'm wondering, are you right-handed?) No pressure, just write when you feel up to it.

Karen, you are going to make me cite my source, aren't you? With my memory these days, that took some doing! In the book "Conquer Chiari" by Rick Labuda, (2008), he states, "As a syrinx expands it can cause permanent nerve damage and even lead to paralysis." Labuda is not a doctor; he is a victim of Chiari. And he does not cite his source. But he wrote this book with the help of doctors and scientists, and I'm inclined to accept his effort as written. I agree, though, that when it comes to the syringomyelia literature, I don't recall seeing "paralysis" except as the result of injury, surgery, or I think, tumor. Hope you are feeling better these days.

June
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Re: Syrinx surgery?

Postby reedy » Tue Aug 02, 2011 7:12 am

Hi Andi,
Where are you based in England and who is your team? I've posted a fair amount on my experience with UK NS's. There definitely are some good ones out there.

Also, do you post on the Chiari UK website? Lots of local support there. That's how I found out about the team at the Walton Centre (Liverpool), who impressed us a lot.

I hope things are going OK for you.
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Re: Syrinx surgery?

Postby andij » Sat Aug 13, 2011 7:59 am

Hi June

Thanks for your reply. Sorry for delay in replying was difficult using the laptop for a while. So glad to hear your op went well and the leg pain and nerve pain have gone (hopefully permanently). I hope the weakness,fatigue and muscle soreness will ease as you continue to recover and that you can get back to swimming. I am doing much better now. My right arm (yes I'm right handed) is about 80% back to normal now and the pain and numbness has eased considerably. I still need help with a few things but I think it will be back to normal in a few weeks. I'm so relived. I'm seeing the physio on Tues so hopefully I'll get some exercises to help re-strengthen my arm. My neck is still a bit stiff from the de-compression but for only 3 weeks on I now feel like I'm doing really well. I'm just waiting for a scan now to see if the syrinx has drained but I have my fingers crossed. The pain in my back has eased a bit and bladder problems I have have also eased a bit so I'm hoping that's a sign that it has drained.

Annemarie - thanks v much for the info. I will defiantly check out the website you suggest. I am hoping the surgery I have had will solve my problems but I now know where to turn if the problems continue.

Karen - thanks for responding and reassuring me. I'd heard paralysis was a possibility and it just freaked me out a bit. Sorry to hear about your situation. Is there anything they can do for your pain or to treat the SM and is this weakness of your legs permanent?

Reedy - I'm in Manchester at Royal Salford Hospital. The surgeons there are v good and v experienced and I feel like I am in good hands, its just that as my situation apparently is unusual and they haven't really come across it before, I do wonder if there are other options. I know they have consulted with other consultants at other hospital about me, certainly in this country maybe abroad so hopefully they are doing the right thing. I didn't know about the Chiari UK website but will have a look now I know. Thanks

I'm so glad to have found this site and have people to turn to who understand and can advise.

Thanks all

Andi
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Re: Syrinx surgery?

Postby andij » Mon Mar 26, 2012 6:44 am

hi
i had an arachnoid shunt put in my spinal cord on thurs and am now in a lot of pain but on the long road to recovery. My syrinx is segmented and I also have an arachnoid cyst in my neck. Am waiting now to see if the syrinx is communicating and whether the syrinx has collapsed. if not apparently there is nothing more they can do for me!!! Any success stories out there where arachnoid shunts have successfully collapsed the syrinx? Also since the op my legs have been numb with pins and needles. I can move my legs and walk but I cant really feel them. Is this normal after this type of surgery. Is it temporary?
Thanks
andij
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Re: Syrinx surgery?

Postby reedy » Mon Mar 26, 2012 2:02 pm

Hi Andij
You are back! It sounds like you had a rather heavy surgery though. I'm sorry to hear you've got some pain and weakness to deal with. Your symptoms sound like all the kind of things I've heard can happen with any neurosurgical intervention in your spinal cord. Others will know more about this than I do, but I just got back from meeting with my neurosurgeon who listed similar things for the syrigopleural shunt he thinks needs to go in me pronto.
Sending you all the best
reedy
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